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[Note that Dr Bell's view that ME/ICD-CFS and Fibromyalgia represent the same illness is an opinion which many of the world's leading M.E. researchers and clinicians would strongly disagree with, there is also an abundance of research to support this view. See M.E. and other Illnesses for more information.
Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 1, Number 2: September 1, 2004
Topics: Introduction, Notes from the Farm, Rookie Section , Section for the Old-timers,
Case Reports and Literature Review.
[Information about autoimmunity and the autonomic nervous systems]
*O* Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 1, Number 3: October 4, 2004
Topics: Definitions of an Illness, Introduction, Guest Editorial: Jean Harrison, MAME, History, Literature Review, Clinical Notes, Question and Answer
The symptom of fatigue as experienced in CFS is quite different from the shared common experience of fatigue... The symptoms are at least partially relieved by recumbency.(7)
The symptom of orthostatic intolerance causing limitation of sustained upright activity is the central disabling symptom of CFS. After a period of time in the upright position, a person with CFS becomes overwhelmed with “fatigue,” pain, confusion and other symptoms requiring the patient to lie down. Symptoms such as sore throat, lymph node pain, muscle and joint pain are not in themselves orthostatic, but in my experience, are exacerbated by prolonged standing or sitting. I feel that the cognitive symptoms of CFS are orthostatic in nature, but this has not been tested.
[Information on Melvin Ramsays excellent work on M.E. and some information on orthoststic intolerance and M.E.]
Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 1, Number 4: December 1, 2004
Meeting of the American Association for Chronic Fatigue Syndrome, (AACFS) October 8-10, 2004; Madison, Wisconsin
In recent years there has been, in my opinion, an apathy that has crept in and pervaded some parts of the support community. Perhaps it has been due to ill health, perhaps the patient community is giving up, discouraged by a perceived lack of progress. Maybe it is that the old-timers are just getting older. But whatever the reason, people need to remember that nearly everything good that has come to patients with CFS has come via the support community. This includes the excellent conference in Madison, Wisconsin, sponsored by the Wisconsin support community and the excellent conference summary by Dr. Roz Vallings, who attended the conference thanks to the patient organization in Australia and New Zealand, ANZMES. The guest section of this newsletter is a part of her report, reproduced here with her kind permission. So, support people, don’t give up. Don’t get discouraged. Follow your hopes/dreams/passions, and if this includes activism, get involved.
Definition of Chronic Fatigue Syndrome (CFS) It is inappropriate for physicians to say that there is nothing known about chronic fatigue syndrome, and that maybe it isn’t even real. While many blanks remain to be filled in, including nearly all the blanks on treatment, there are many basics about CFS that are now accepted by most physicians interested in the illness. And the medical literature of nearly 1000 good articles can support the basic premises of CFS
[Overview of current ME/ICD-CFS research]
Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 2, Number 1: January 2005
Topic: Sleep in CFS
Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 2, Number 2: May 2005
Autoimmune Dysautonomia ?
I am really not much of a political person. I don’t like politics, mainly because I do not like it when people are not honest. And politicians are rarely honest. They can convince themselves that they mean to be honest, but expediency usually wins out. Having said that, I could not be a politician because there are too many hard choices to make. How do you spend $100? On education? On health? On new roads? Give it to starving people in the third world? I could not decide this, so my solution is to avoid politics as much as possible.
But not today. The world of ME/CFS is in chaos in this country. It is getting better in other countries. So I would like to devote some of this issue of the Lyndonville News toward politics and activism. Without voices like yours, ME/CFS will stay an invisible illness.
[The need for people with ME/ICD-CFS to be politically aware and active, the role of genes, and autoimmune disease and ME/ICD-CFS]
*O* Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 2, Number 3: July 2005
Cerebral Atrophy
I do not like to deliver discouraging news. But for many years the medical world has been dismissing CFS/ME because there has been no science to say that this illness is serious. Now that scientific information is pouring in abundantly. Is the medical world going to continue to maintain that ME/CFS is a trivial psychosomatic problem of neurotics and hypochondriacs?
In this issue of the Lyndonville News I would like to summarize several studies, two of which show the presence of cerebral atrophy. In lay terms, that means that the brain has decreased in size, presumably because of death of brain tissue. The other reviews outline a new study proving the cognitive symptoms and some older studies demonstrating decreased blood flow to the brain (cerebral hypoperfusion). In my opinion these issues are connected or linked.
Visit PediatricNetwork.org to read articles from past issues of the Lyndonville News published between January 1999 and November 2001
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*O* Circulating Blood Volume in Chronic Fatigue Syndrome David H. P. Streeten, MB, DPhil, FRCP, FACP David S. Be11, MD, FAAP
ABSTRACT. Chronic fatigue syndrome (CFS) is an illness associated with severe activity limitation and a characteristic pattern of symptoms despite a relatively normal physical examination and routine laboratory evaluation. The recent description of delayed orthostatic hypotension in patients with CFS, and previous findings of reduced red blood cell (RBC) mass in other patients with orthostatic hypotension not known to have CFS, led us to measure RBC mass and plasma volume in 19 individuals (15 female, four male) with well characterized, severe CFS. RBC mass was found to be significantly reduced (p < 0.001) below the published normal range in the 16 women, being subnormal in 15 (93.8%) of them as well as in two of the four men. Plasma volume was subnormal in 10 (52.6%) patients and total blood volume was below normal in 12 (63.2%). The high prevalence and frequent severity of the low RBC mass suggest that this abnormality might contribute to the symptoms of CFS by reducing the oxygen-carrying power of the blood reaching the brain in many of these patients.
Conclusion: Of the 19 patients reported here, abnormalities in blood volume were very common. The most common, found in 16 of 19 patients, was a reduction in red blood cell mass. Eleven subjects had low plasma volumes, and total circulating blood volume was subnormal in 12 of 19 subjects. In some individuals this abnormality was strikingly severe. Patient #15, for example, had an RBC mass of 12.9 mL/Kg, which is 46% of the expected normal, and a total blood volume of 35.8 mL/Kg, which represents 49.7% of the expected normal value (21). Her peripheral hematocrit was not impressively low at 33.8%, presumably because of the symmetrical reduction in both RBC mass and plasma volume. In other patients the plasma volume was normal or even elevated in the face of a low RBC mass, and in nqne of these patients was the RBC mass abnormality detected by conventional interpretation of the peripheral hematocrit.
All of the subjects in this study had symptoms of orthostatic intolerance which probably contributed to their activity restriction, but tilt table and autonomic nervous system testing was not carried out systematically in these individuals. Normal sitting blood pressures were recorded in all patients under office visit circumstances, except for relatively low values in three and a mildly elevated blood pressure in one. Some of these patients have been tested subsequently and found to have delayed orthostatic hypotension (12), which may be characteristic for CFS (11,12). In general, blood pressure measurements were not predictive of the results of circulating blood volume measurements.
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*O*Evaluating Blood Volume Studies - Some Thoughts David S. Bell, MD, FAAP
Published in Lyndonville News, March 2000
I. Blood Volume Data. So far in our office we have measured the circulating blood volume in nearly fifty patients using the Chromium 51 method. It is essential that this method be employed (done in the nuclear medicine department of large University hospitals) as it is the only reliable method of assessing blood volume. There are two components of blood: the red blood cells and the plasma (fluid); everything else doesn't contribute much to the volume. The results are expressed as a function of body weight. Normal red blood cell mass should be between 23 and 28 ml/Kg, and the plasma volume should be between 40 and 52 ml/Kg. The total circulating blood volume is the sum of the two parts, and should lie between 60 and 80 ml/K.
Overall, about eighty percent of our patients with CFS have had either a low red blood cell mass, plasma volume, or both. Some patients have been extremely low, less than 50% of normal blood volume. To put this in perspective, if a healthy person were to bleed 40% of their volume out in a car accident it would likely be fatal. The loss in CFS is presumably gradual. The finding of decreased blood volume in CFS first came from Dr. David Streeten, and I am convinced it is accurate and will serve as a marker for the illness in some regard. |
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